Sunday, February 27, 2011

10 Years of the Long, Long Fight for A REAL Canadian National Autism Strategy

Stefan Marinoiu, father of a severely autistic son, set out on foot from Toronto to Ottawa in mid Canadian winter and later went on a hunger strike to bring attention to the challenges faced by autistic Canadians and the need for a National Autism Strategy

Autism Speaks Canada is holding a National Autism Strategy meeting in Banff Alberta next week and was kind enough to invite me as a participant and to subsidize my travel and accommodations. Some autism advocates I have talked with, people who have been actively involved in their provinces advocating for autism services and advocating for a REAL National Autism Strategy for many years are skeptical about the meeting. Autism Speaks Canada has been soliciting funds for autism in Canada but to what end? What have they accomplished and what do they intend to do with the monies received, monies which could be directed toward provision of services for autistic persons. These are important questions and deserve answers. I would also point out that autism services in Canada have been obtained by parents fighting provincially not by national autism organizations. I look forward to the meeting and the discussion though and will approach it with an open mind and hopeful that the real needs and priorities fought for by autism advocates in Canada for a decade will be addressed in the meeting.

These priorities include:

1) National medicare coverage for ABA and any other intervention which meets the evidence based standard of effectiveness as an autism intervention.

Federal funding to assist all provinces in meeting the needs of autistic Canadian across their lifespans must also include:

2) National discussions of methods for educating students with autism in the way the individual learns best in the learning environment in which they learn best. Dumping all autistic children in the mainstream classroom regardless of their individual challenges, refusing to provide autism trained assistants to those who need assistance, does not work and can cause harm. Schools across Canada should learn best methods for teaching autistic children and avoid ideology, rhetoric, buzz words and cliches. Autism trained teachers and teacher/education aides are required for many autistic students and the federal government can provide a national forum for ensuring this happens and financial assistance where necessary.

3) (a) Work force hiring and training for those autistic adults who are capable.

3)(b) Adult autism residential care and treatment for the most severely autistic.

Any efforts toward a national autism strategy have to address these priorities and do so in a way that actually helps people with autism across the life span from early intervention to education to adult workplace and residential care issues. If a national autism strategy does not speak to these priorities and commit to real action to address them it is not a real national autism strategy and should not be presented to the public as such.

The Fight for a National Autism Strategy, a REAL National Autism Strategy, has been going on for many years in Canada. Here in New Brunswick the struggle for a real national autism strategy has lasted a decade. It began before Autism Speaks was formed in the United States and was waged without any real assistance from the Autism Society Canada. The fight for a real national autism strategy was fought by activists in British Columbia like the families involved in the Auton litigation and FEAT-BC, it was fought on the Hill in Ottawa by a courageous Andrew Kavchak. It has been fought by Stefan Marinoiu with his winter trek and hunger strike.

Here in New Brunswick the fight for a National Autism Strategy was fought initially by an organization called FACE of which I was a founding officer. It was publicly acknowledged, after a couple of years of effort by FACE representatives, by Fredericton MP Andy Scott in a high profile October 2003 event celebrating Andy's 10 years as an MP and featuring as a guest speaker former NB Premier Frank McKenna. Do the math. Here in New Brunswick the fight for a National Autism Strategy has been carried on for a decade, since 2001:

Tali Folkins article in the NB Telegraph-Journal, October 20, 2003:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

Andy Scott, with other MP's, was ultimately successful in getting a National Autism Strategy motion passed in the House of Commons. That effort was important in obtaining recognition of the need for a national autism strategy but it did not provide what parents of autistic children were fighting for from BC to Nova Scotia: a federal commitment to provide Medicare funding for ABA which to date remains the only evidence based effective intervention for autism.

The federal government has done nothing, absolutely nothing, to address the real needs of autistic children, school kids with autism or adults with autism needing assistance in the workplace or needing residential care. The federal government has done nothing to help those adults with severe autism who need 24/7 residential care and treatment. The federal government has stayed outside the battle content to hide behind constitutional jurisdiction line while ignoring the challenges faced by autistic Canadians and their families.

Canada has been living through an autism crisis. Progress has been made. More in some provinces than in others. Much more remains to be done. To date such progress as has occurred has taken place because of activists in each province pushing provincial governments. Meanwhile the federal government has effectively disowned autistic Canadians refusing to recognize with real actions the need for a comprehensive national autism strategy.

A real national autism strategy is not accomplished by establishing a new autism bureaucracy in the federal civil service. A real national autism strategy should not focus on a Canadian specific surveillance study of autism rates as its number one priority or even establishing another academic chair at a University in Ontario. A real national autism strategy should focus on the real needs of autistic Canadians and real action to address them NOW not in another 10 years.

Those real needs and real priorities have been articulated for a decade. If a national autism strategy is going to help autistic Canadians with the real challenges of their autism spectrum disorders real action has to be taken and it has to be taken now.

Pondering the problems faced by autistic children and adults for another decade will not help autistic Canadians living today.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.